I am new to this forum, and feeling uncertain of the way things are going regarding my Pramipexole - so it's good to read what others say on the subject. Started taking 1 tiny tablet 0.088mg 18 months ago. This was then increased to 2, then 3 and now the equivalent of 4. (0.35mg). I have asked doctor if I can come off them to see if I can manage RLS without medication, since my body gets used to each increased dose and craves more and more. So I am now reducing, I am not sleeping, feel agitated, get my RLS whenever I try to sit and relax, and feel totally worn out. He is suggesting I drop the dose by 0.088mg every 3 days, so tonight I will be taking just one tiny tablet again. Wondering if I will be crawling the walls and whether I will sleep at all. Didn't realise this medication could carry such problems with it instead of making me better.
Am I doing the right thing? - Restless Legs Syn...
Am I doing the right thing?
Ignore him! Bad, negligent advice! Withdrawal from pramipexole is very dangerous and has to be done very, very slowly. Minimum of 3 months up to a year.
The medication leaflet includes a warning.
Please read all the pinned posts on Augmentation and look at all Manerva’s posts and replies to posts over the last 2 weeks. You’ll learn all you need to.
Do not touch another dopamine agonist.
Jooles thank you for your advice. I've just spent the last hour reading as much as I could find on dopamine agonists, including Dr Mark Buchfuhrer's article, and it makes me even more determined to learn to accept and live with this condition in the hope that I can better manage it myself. The leaflet with my Pramipexole does not, however, state how slowly to come off this drug and leaves it up to the GP. He said 9 days and so I have been aiming towards that. I do feel very anxious though especially after what you said about this.
Believe me- if you try to reduce the pramipexole in just 9 days it’s effectively cold turkey and you will suffer horrendous withdrawal symptoms! You’ll have 24:7 intense, severe RLS jerks and spasms and you won’t be able to sit still or sleep.
Many of us have been through withdrawal and for over 90% it’s worse than heroin or crystal meth withdrawal ( according to experts obviously!).
Please ignore your doctor and read everything about augmentation and withdrawal.
Dr Winkleman, another RLS expert in the USA recommends a minimum of 3 months. As you’re on a very high dose you should go even slower.
I suggest that you reduce the pramipexole in steps of 0.044mg that is, half a 0.088mg tablet and no more often that every two weeks and up to 4 weeks.
What you're currently experiencing is withdrawal effects which can be considerably reduced if you wean off the drug very slowly.
I've already gone through the first two stages of reduction and I'm down to one 0.088mg tablet tonight. If this has been too fast, are you saying I should go back up to two or even three tablets? It's hard to know what to do for the best. Actually dreading going to bed, and hoping a hot bath will make me sleep for a while. Thanks for your input!
It took me a year to ramp down from 3.5mg of Ropinirole. You simply have to take your time with it. Once I had ramped down to zero then the consultant suggested Pramipexole and so I used the minimum dose for several weeks before I would need more and then switched to Ropinirole and then back again (I also take 100mg Pregabalin). It's not a real solution and so I decided to come off dopamine agonists. Last Saturday was my last 0.088mg Pramipexole.
I knew what to expect and accordingly on Sunday and Monday nights I literally did not sleep at all. Last night was slightly better. I'm now on 2x 100mg Pregabalin (afternoon and bedtime) and will up it to 3x 100mg on Saturday. My doctor has prescribed codine to help for the next couple of weeks and then we'll work out where to go from there.
So listen to Jools and take something like a month between reductions. Do NOT stop taking them all at once.
I might write some sort of diary about how I get on with coming off the dopamine agonists.
So all the best, you are not alone!
Thanks for telling me your own experience. I have coped (just) with reducing by 0.088mg every 3 days and tonight I am on the smallest dose of just one tablet. I really dont know how my body is going to react to this and I'm feeling alarmed now that other members on here say this is too quick to withdraw. I think maybe I should try to speak to a doctor in the morning and tell him my concerns.
Yes, talk to your doctor but be aware that RLS is low on their horizon and so you may just get stock answers from him/her. They are bound by the NICE guidelines which have encouraged the use of dopamine agonists (and to up the dose over time) and they have little experience of reducing the dose. This web link gives you an idea of how long standard medications for RLS take to get out of your system: rls-uk.org/treatment. Pramipexole takes about 3 days to reduce to 1.5% i.e. it is still in your body after 3 days. One thing that seems evident is that some folk still get symptoms for a while after coming off dopamine agonists.
The effects of reducing the dosage will depend on how RLS presents itself in you - it varies a lot. For me, either my left or right leg will jerk; I get sensations in my arms; and in bed my body will jack-knife from my stomach (I get sore stomach muscles). When the latter happens then I have no alternative but to get up and walk around or find something to keep me busy (I'm currently building a model aircraft for my granddaughter).
All I can really advise is to take it slowly and find the optimum solution that takes you down to zero. If your aim to get to zero dosage then staying on the minimum for say an extra week might be more beneficial in the long run.
All the best!
The leaflet does mention DAWS - and that is very real. It doesn’t include a timetable for reducing dose but it does mention DAWS and to reduce slowly
medicines.org.uk/emc/files/...
Joolsg what is DAWS? .. I'm wondering if the hellish place I have been in has anything to do with that .. ???
Dopamine Agonist Withdrawal Syndrome. It says 19% suffer DAWS but I suspect the figures are much higher. My doctors and neurologists completely belittled the trauma of my withdrawal, despite the horrendous physical symptoms, total lack of sleep/rest & my suicide thoughts. I was on 4mg Ropinirole for 16 years. I didn’t suffer Impulse Control Disorder but I definitely suffered DAWS & it lasted about a year in total.
sciencedirect.com/science/a...
You have to pay to read this link! I was suicidal last week didn't know where I was ...felt overwhelmingly sad .. was non functional ... couldn' t communicate just cry .and my Dr wrote in my notes "won't commit suicide".
psychcentral.com/news/2018/...
Another more recent report. It’s disgraceful how doctors dismiss the withdrawal symptoms! The vast majority suffer terribly and consider suicide during the 6-12 months after withdrawal.
We really do need to keep pushing & reporting the symptoms or we will never be taken seriously.
I started on Pramipexole 16 years ago with .25 once or twice a day and it was a miracle drug for me until I had to keep increasing my doses - often doubling up prior to an airline flight or long car trip. My neurologists (several all within the same large University practice) would continually increase my dose until last year I was told about augmentation. Even after telling me about the augmentation issue, the doctor never addressed it, so I switched yet again to another one in the group and in June she tried pushing me towards Methadone, which I declined. She then took me off of Mirapex cold turkey and replaced it with a 2mg Neupro patch. I did not sleep for 17 days straight, cried, took multiple hot baths a day, sobbed, paced thru the whole house, walked on the treadmill or road the exercise bike and cried some more - all the while having severe spasms that moved up into my arms. Two weeks after starting me on the Neupro patch she had to increase it to 4mg and a month after I went thru the Mirapex withdrawal she suggested I take .5mg of Mirapex once or twice a day to help reduce the spasms that the patch was not addressing. At this point my PCP asked if I trusted this woman and I said NO. I have now retired and am on Medicare so I can see physicians in any group or practice - I have an appt. in November with a new neurologist in a different health plan and hope she will have some other suggestions since the last one - in our last conversation - said I should just "play with my meds". My PCP has put me onto Tramadol and I take Gabapentin throughout the day and occasionally pop a .5mg Mirapex. I also take Magnesium supplements - but the symptoms still occur any time they want and the severity varies. I tried to get into Johns Hopkins' specialty clinic for RLS but their physicians are overwhelmed with a large number of in-state patients so they told me to try back in 3-6 months since I'm out of state.
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